Inavolisib vs Alpelisib
Hello Thrivers I was diagnosed last September stage 4 de-nova. The cancer had spread from my breast to lymph nodes, to spine and right hip. Pr,er positive her2 negative. I started on Tamoxifin, then ...
Forum Discussion
Hi Amelia
Hope you are going well. I got on the Alpelisib(piqray) and fulvestrant, but unfortunately after 3 cycles I got progression in my ribs.
I had terrible pain and had to go hospital and after scans they saw 2 new spots.
I then asked for a second biopsy which I had in my hip and my diagnosis had changed to TNBC.
It was upsetting but also a relief to know why all my treatments weren't working.
The treatment though helped in other spots and had shrunk a few lymph nodes and my liver lesions. So the trial worked for the pik3ca mutation.
As for the drug it self, I found it very tolerable hardly any sickness after the first week. I took my sickness tablets as required.
I was put on metformin as my blood sugars crept up, these were checked every morning half an hour after waking up before food.
You will be given a machine to check and you will record these in your booklets they give you. Both drugs on the trial require this.
It gets easier after the first few days to check as it just gets part of the routine.
Try and take your tablets same time everyday after eating. I found lunch time for me worked well.
You will feel fatiqued for the first 2 to 3 weeks but it gets better. I didn't get a rash, a few aches but nothing major in the 3 cycles of side effects.
Diarrhoea and sickness are the most prominent ones but after a week I was ok. Have your gastrostop ready to.
They should give you mouth rinses for sores, I never got any though but keeping your oral health good helps.
Rinsing your mouth in bi carb 1/4 teaspoon and 1/4 teaspoon of salt in one cup of warm water after meals helps to.
Have you had all your tests beforehand? I had my eyes tested before and just before Christmas I had another, even though I was off the trial I wanted to complete everything.
I think it's very good treatment and I hear the other one is as well from other ladies in the UK. Just wasn't for me.
I am doxorubicin pegylated liposomal at the moment had two cycles, one more before scans. This treatment has been my worse. Had a few side effects.
My oncologist has sent my biopsy of to CaSP in Sydney. I just need more blood tests and then hopefully with the research on my DNA etc they will find treatment catered to me.
I am an unusual case as Iam on my 4th line in 16 months, a change again in my cancer. Er+pr+ her 2 negative originally, then pik3ca and now Tripple negative.
The fulvestrant jabs go into your upper bottom in the muscle, it does hurt a little at first and aches in the muscle but for me it wore off by the time I got home. I travelled 4 hours for this trial there and back. Just rest after you have them.
I had them first on Day 1, Day 15, Day 28 then only Day 1 again of each cycle.
I wish you all the best lovely. it's really a good treatment. Two tablets too that's what I loved.
Let me know how you go. I will be thinking of you 🩷🩷
Hope you are going well. I got on the Alpelisib(piqray) and fulvestrant, but unfortunately after 3 cycles I got progression in my ribs.
I had terrible pain and had to go hospital and after scans they saw 2 new spots.
I then asked for a second biopsy which I had in my hip and my diagnosis had changed to TNBC.
It was upsetting but also a relief to know why all my treatments weren't working.
The treatment though helped in other spots and had shrunk a few lymph nodes and my liver lesions. So the trial worked for the pik3ca mutation.
As for the drug it self, I found it very tolerable hardly any sickness after the first week. I took my sickness tablets as required.
I was put on metformin as my blood sugars crept up, these were checked every morning half an hour after waking up before food.
You will be given a machine to check and you will record these in your booklets they give you. Both drugs on the trial require this.
It gets easier after the first few days to check as it just gets part of the routine.
Try and take your tablets same time everyday after eating. I found lunch time for me worked well.
You will feel fatiqued for the first 2 to 3 weeks but it gets better. I didn't get a rash, a few aches but nothing major in the 3 cycles of side effects.
Diarrhoea and sickness are the most prominent ones but after a week I was ok. Have your gastrostop ready to.
They should give you mouth rinses for sores, I never got any though but keeping your oral health good helps.
Rinsing your mouth in bi carb 1/4 teaspoon and 1/4 teaspoon of salt in one cup of warm water after meals helps to.
Have you had all your tests beforehand? I had my eyes tested before and just before Christmas I had another, even though I was off the trial I wanted to complete everything.
I think it's very good treatment and I hear the other one is as well from other ladies in the UK. Just wasn't for me.
I am doxorubicin pegylated liposomal at the moment had two cycles, one more before scans. This treatment has been my worse. Had a few side effects.
My oncologist has sent my biopsy of to CaSP in Sydney. I just need more blood tests and then hopefully with the research on my DNA etc they will find treatment catered to me.
I am an unusual case as Iam on my 4th line in 16 months, a change again in my cancer. Er+pr+ her 2 negative originally, then pik3ca and now Tripple negative.
The fulvestrant jabs go into your upper bottom in the muscle, it does hurt a little at first and aches in the muscle but for me it wore off by the time I got home. I travelled 4 hours for this trial there and back. Just rest after you have them.
I had them first on Day 1, Day 15, Day 28 then only Day 1 again of each cycle.
I wish you all the best lovely. it's really a good treatment. Two tablets too that's what I loved.
Let me know how you go. I will be thinking of you 🩷🩷